COVID-19 Update: August 2021
The ICC have updated their Covid-19 guidance for people with FOP after a meeting of the members.
The following guidance also explains about the Covid-19 vaccine. An update to previous advice, is that “the ICC is unable to recommend for or against the Covid vaccine for patients with FOP. The decision to take a vaccine is a personal one and based on the balance of risks and benefits, and this should be discussed with your medical team.”
These guidelines are written with an international viewpoint. It is advised that the current NHS guidance for the UK is also taken into consideration, especially in light of the new strain of Covid-19 which is believed to spread more quickly.
For patients, families and carers, please SCROLL DOWN THIS PAGE TO READ THE ADVICE from the International Clinical Council for FOP.
The Coronavirus (COVID-19) pandemic continues to pose a significant risk to the population worldwide with new variants of SARS-CoV-2 virus are emerging.
There have also been reports on non-genetic heterotopic ossification developing in NON-FOP patients with COVID-19 infections.
The ICC recommends that people living with FOP to continue to follow strict precautionary measures to prevent infection from SARS-CoV-2, the virus that causes the COVID-19 illness.
The ICC is providing this update to the prior statement in Dec 2020. This document focuses on COVID-19 vaccination recommendations.
The key recommendations are changing rapidly and are country specific:
The recommendations are changing rapidly, are country specific and based on COVID-19 vaccine availability:
New! At this time, ICC is unable to recommend for or against the COVID vaccine for patients with FOP.
New! The decision to take a vaccine is a personal one and based on the balance of risks and benefits, and this should be discussed with your medical team.
New! Most common side effects of the vaccine in non-FOP patients has been fever,chills, muscle aches and pains, and fatigue. There are rare reports of other side effects such as allergic reactions or anaphylaxis. However, there are quite a number of people that tolerate the vaccines well too.
New! For patients with FOP, the major consideration is the risk of intramuscular (IM) injection and flare ups. The ICC currently does not recommend subcutaneous COVID19 vaccination because there is no data for safety or efficacy using this route. IM injection of some vaccines (non-COVID) has been associated with an increased risk of FOP flare activity and heterotopic bone. For example, the DPT vaccine is associated with HO in 27% of FOP children (Lanchoney et al., 1995). The specific mechanisms and incidence are still unknown.
New! Because very little is known about COVID in patients with FOP, please consider being part of the observational clinical study for patients who have been exposed or diagnosed with COVID, or who are considering the COVID vaccine. This study is led by Dr Edward Hsiao at UCSF. Please contact him at firstname.lastname@example.org if you are interested in learning more.
New! If you decide to take the COVID vaccine, we recommend:
- Discuss your plans with your doctor. Review any potential allergies or prior reactions like anaphylaxis that you should consider before taking the vaccine.
- Take the vaccine via the recommended route and dose (ie intramuscular for the currently available vaccines). Safety and efficacy of taking an IM vaccine through the subcutaneous route is not known, and could cause a more exaggerated inflammatory response and is currently not recommended.
- If possible, take the vaccine in a location that is already fused, as the vaccines all appear to induce some local site reaction (arm pain and swelling). For example, if your left hip or right shoulder are fused, you should use the muscle around those sites.
- You should be flare free for at least 2 weeks prior to receiving the vaccine.
- Have the injection done by an experienced nurse or physician or pharmacist.
- Use the shortest needle available (this varies with site). The clinician should be aware that patients with FOP may have hidden HO and thinned muscle at the site of the injection. Avoid injecting directly next to existing HO bone if possible.
- Prior to the vaccination, have ibuprofen or acetaminophen available. Also, have a course of prednisone for flares available.
- Make sure your physician is familiar with the ICC Treatment guidelines, specifically on vaccinations and flare management. Guidelines – International Clinical Council (ICC) on Fibrodysplasia Ossificans Progressiva (FOP) (iccfop.org).
- Notify your physician you plan to do the vaccine, and when.
On the day of the injection:
- Your local team may not allow you to take ibuprofen or acetaminophen prior to the injection (this is because they may screen for COVID symptoms first).
- After you receive your injection, there may be a brief observation period.
- After that is completed, take ibuprofen (2 to 3 times/day) or acetaminophen (2-3 times/day) following the label instructions, for the next 48 hrs, regardless of your symptoms.
- Rest and stay hydrated.
- In the event of a flare, contact your physician for guidance. You may need to do a short course of prednisone, but this needs to be balanced with the immunosuppressive effects of steroids. The usual flare dosing is prednisone 2 mg/kg/day up to 100 mg, for 4 days; your physician may recommend starting at a lower dose, depending on your symptoms.
- Even if you take the vaccine, you still need to continue physical distancing, wearing masks, and appropriate hand washing
- The ICC can’t guarantee that these steps will “work” to prevent complications. All medications and treatments have risk, so it is important to discuss your specific situation with your doctor as you decide whether to take the vaccine or not.
- Make sure that you complete the full immunization regimen recommended (ie do both doses if the vaccine recommends 2 doses)
- Discuss with your physician if you should do a booster if that is needed, such as to cover local variants. This is an area of active investigation so will need to be updated.
New! How does the development of a vaccine change things?
- Recent developments of a vaccine provide long term hope (see table below for some of the currently available vaccines). However, the impact of the vaccine on the pandemic will take quite some time to manifest. Many types of vaccines are being tested and new variants of SARS-CoV-2 virus are emerging and so this is a rapidly changing field.
- Vaccines to date are not approved in children or with subcutaneous delivery. This is actively being studied, and will be added to the guidelines once available.
- The duration of immunity conferred by the vaccines is unknown.
- At this time, the ICC does not recommend vaccination for children due to the lack of safety and efficacy data.
- At this time, the ICC can not recommend for or against vaccination in FOP adults. The specific risks and benefits should be discussed with your physician.
- The ICC recommends that FOP family members and caregivers get vaccinated for COVID-19 if safely available for them.
- Vaccinations can take 2+ weeks to show any efficacy, so there is no protection immediately after vaccination. In addition, vaccines do not confer absolute immunity to the SARS-CoV-2 virus, and may not have activity against all forms of the SARS-CoV-2 virus. Anyone who receives a vaccine should still continue with masking, hand hygiene, and physical distancing.
- This information is rapidly evolving. Please discuss with your local care providers regarding benefits and risk of any locally approved vaccines.
- It’s very important to maintain social distancing and wearing a mask when around members outside your household.
- Additional updates will be shared as new information becomes available.
This information is from previous guidance:
Please follow the advice of your local health authority for patients in the high risk group (similar to immunocompromised).
Preventing the spread of SARS-CoV-2 (the virus that causes COVID-19) is critical.
- NHS England
- World Health Organization (WHO) information
- Centers for Disease Control (CDC) information
SARS-CoV-2 is a new type of coronavirus that can cause the COVID-19 disease. COVID-19 can affect your lungs and airways. The most common symptoms of COVID-19 are fever, dry cough and tiredness. Some patients may have shortness of breath, aches and pains, loss of taste and smell, nasal congestion, runny nose, sore throat or diarrhea. In some, the disease can be severe and life threatening. The best way to prevent illness is to avoid exposure to this virus.
How is SARS-CoV-2 spread?
People can catch the SARS-CoV-2 virus from others who have the virus. SARS-CoV-2 is highly contagious. The disease can spread from person to person through small droplets from the nose or mouth which are spread when a person infected with SARSCoV-2 (even if asymptomatic) coughs, sneezes, or is talking. Data also suggest that the virus can be air-borne. Transmission is highest in indoor settings.
It is possible for a person infected with SARS-CoV-2 to be asymptomatic or have minimal symptoms, but can still spread the virus.
- Avoid touching your eyes, nose, or mouth.
- Avoid high-touch surfaces in public places – elevator buttons, handles, handrails, handshaking, etc. Use a tissue or your sleeve to cover your hand or fingers if you must touch something.
- Wash your hands after touching surfaces in public places.
- Cover your cough or sneeze with a tissue, then throw the tissue in the trash.
- Stay in touch with others by phone or email. You may need to ask for help from friends, family, neighbors, community health workers, etc. if you become sick.
- Clean and disinfect frequently touched objects and surfaces (including iPads, phones,laptops) using a regular household cleaner or wipe.
- Rest, stay well hydrated, and self-isolate.
Take steps to prepare for possible infection:
- Contact your healthcare provider to ask about getting an extra supply of your regular prescription medicines to have on hand if there is an outbreak of COVID-19 in the community and you need to stay home for a long period of time.
- Be sure you have over-the-counter medicines and supplies (tissues, etc.) to treat fever and other symptoms. Most people will be able to recover from COVID-19 at home.
- Have enough household items and groceries on hand so that you will be prepared to stay at home for an extended period of time.
- For respiratory concern or airway management questions please contact your closest FOP expertise center (See the ICC website for a list of current centers). You may also
Zvi Grunwald, M.D.
The James D. Wentzler Professor and Chairman Emeritus
Department of Anesthesiology
Thomas Jefferson University
Philadelphia, PA. USA
What should I do if I think I have been exposed to SARS-CoV-2?
If you have symptoms that resemble COVID-19, you should immediately self-isolate.
Contact your primary care doctor immediately for guidance. Where available, you should be tested for both the influenza virus and the SARS-CoV-2 virus.
Follow established local guidelines for positive and negative results.
Should you get tested for COVID-19?
Please contact your local healthcare provider if you are having any symptoms suggestive of COVID-19 to discuss testing.
We do recommend that you and your care-givers get COVID-19 testing if symptomatic.
As far as we are aware, no FOP patients have developed a flare-up after carefully taken nasal swab for COVID-19 testing.
Should I return to work/school?
We recommend that you reach-out to your local healthcare providers and employers/schools to discuss when and if it would be safe for you to return to work. Follow local guidelines.
Several factors need to be taken into consideration (your current health status and current medications, local COVID-19 cases, work and school environment, transportation considerations).
You will need to continue to maintain social distancing, wear a mask, and use frequent hand hygiene. Also recommended is that you avoid large gatherings and indoor events.
Please remember, the recommendations are evolving rapidly; the ICC will do their best to update you on a regular basis.
FOP Friends will keep these guidelines updated as and when the ICC release new guidance.
Back to School
With most children now back at school, it is a challenging and worrying time for us all. Greater Manchester Health and Social Care Partnership have created a Quick Guide for parents and carers to help them decide what action they need to take, if any, in the event of a case of Covid-19 being identified in their communuity.
This information is not FOP-specific. There have been no changes or updates to the guidance for patients with FOP, from the ICC, since July. Please see below for the latest guidance.
Click on the image to read the Quick Guide in full.
Explaining Covid-19 to children
Probably best known as the illustrator of classic children’s books such as ‘The Gruffalo’ and ‘The Room on the Broom’, Axel Scheffler has teamed up with some doctors, teachers, a mental health professional and Nosy Crow publishers to produce a book to explain Covid-19 to children. The book is beautifully illustrated and is a useful tool for parents to share with chidlren to address some of the many questions and concerns children may be having at present.
At the back of the book there are some links to other websites that can offer you and your family support at this challenging time.
The book is free to download: